Letter to Our Lawmakers

Thank you for taking the time to listen and receive emails from those affected by the loss of Caitlyn DeCilio.

The events from January 1-10 of 2024 has had a very big impact on me and my family. As a mom of 5, it was very hard to watch as this unfolded. Some of my children also have the donor heart on their licenses and are in the process of removing it. 

I can’t / couldn’t  believe that a donation company has/had the right to interfere with medical treatment. Testing wasn’t done because the family was fearful this company would come into the room and kick them out. (Like what happened in Michigan a few months ago). The lady that worked for Our Legacy even had a smile and excited attitude while talking to Caitlyn’s parents. Who does this? Where has humanity gone? 

I completely understand the need for organ donation, this isn’t about that. For all of us (my family) this is about saving the person first and donation second. I too, have instructed my husband to make the call for donation if I’m in a medical state that I won’t recover from. My sister is currently on the donation list after the Johnson & Johnson vaccine caused kidney damage that lead to kidney failure. She’s been in and out of the hospital for blood transfusions and at one point, was on a ventilator due to congestive heart failure after her home dialysis machine failed to extract all the fluid it put into her body. I’m on both sides of this and understand first hand, the need for organ donation. 

What I don’t understand is the rush to the “brain dead” diagnosis. Caitlyn was moving her legs while she laid in the hospital bed and the doctor said it’s “just reflexes” but when they put the ice water in her ear, they were looking for a “reflex”, correct? An EEG was never done, even though that was the agreement made with Our Legacy on January 8th. The same day they did the ice water test and declared her brain dead. This wasn’t the first time they tried to make this declaration either. 

Didn’t we’ll all learn that people can stay on the ventilator for several weeks and survive when we had the pandemic happening? I personally know someone that was in the ICU for a few months on a ventilator and fully recovered. Why wasn’t Caitlyn given time? The end result could have been the same but we’ll never know. 

Recently, there was a news report from North Carolina about a young woman Caitlyn’s age. She fell from a moving golf cart while in Florida on spring break. She was air lifted to a hospital that is more advanced in brain injury treatments. The day I read it I thought “she must not have that red heart on her license”.  I don’t like that I had that thought because all life is precious.

We are asking the State of Florida to care enough about its citizens to provide more detailed information to young people getting their license and state I.D.’s, so they understand that at the age of 16, they are signing a Last Will and Testament. We are asking for a change in the law so no other family has to go through what Jessica, Anthony and Tyler had to go through with Our Legacy. We are asking that hospitals put patients first, not the partnerships they have with organ donation companies.

I have had the pleasure of being friends with the DeCilio Family for many years now. They have two adult children that I have come to see as family of my own. Caitlyn, the youngest, was a very kind, caring human, and always put others before herself. Family and friends meant everything to her. She was her mom’s best friend, daddy’s little girl and her brother was everything to her. Caitlyn, at the age of 23, was just living and enjoying life.

On January 1st the world turned upside down on her. Sitting at home, eating some leftovers and suddenly choked. A freak accident that left her clinging for her life in the ICU. The DeCilio’s went through hell; every minute unsure of what was next for Caitlyn. Would she recover quickly? Would she have lasting mental or physical injuries? Would she survive at all? These are the things any normal family would be concerned with. But instead, the organ donation agency came in like vultures, hovering over them, waiting for Cait to be declared brain dead.

The family shouldn’t have been in this position. They should’ve been spending time with their daughter, surrounded by their loved ones. I was there every day at the hospital watching this family go through hell, watching their daughter dying right before them. Yes, when Caitlyn was 15 years old, she checked the box “yes” when asked at the DMV if she wanted to be an organ donor. She had also expressed as much to her mother. Being that Caitlyn was a minor at the time of making this election, both her and her parents should have received information on the full scope of becoming a donor; but she checked that box and at that point she had turned over her entire body without even knowing. She was willing to give everything, except her eyes. She did not know that she had signed over the right to that decision, 8 years ago, at the DMV.

Organ donation companies shouldn’t be allowed to hover over a family waiting on a death. They should have to step back and wait. Let the family make their peace with the situation. Let the family find hope and solace in the last gift from Caitlyn of organs for those in need. The problem seems to be that they make tons of money from organ donation, and they have no respect for families going through this.

My heart broke everyday watching this family be put through this. I saw a mother’s guilt and grief as she held her only daughter’s hand, willing it to move, praying for any sign, hoping to wake up from this nightmare. I saw a father’s despair as he glanced upon his little girl, disbelief

and shock clouding his eyes. These were my friends and it pained me beyond words to witness their pain and their struggle. It made me angry to see the representatives from the organ donation company treat my friends with such apathy, no regard for their feelings nor for the loss of this beautiful life to so many. My heart still aches for my friends as they deal with the day to day of life without their child. Now our only hope is to make a change so that education is readily available, and the laws are changed.

I believe that the law should be: You must be 18 years old to elect organ donation. A minor you can’t sign other legal documents, can’t rent an apartment or buy a car, so why this? We require minors to take a drug and alcohol training course, why isn’t this included as well? It should be 18 and it should be mandatory to be provided with information regarding your election.

We must get together and change these laws. Organ donation always has and always will be a powerful gift of life, and I support it fully. I just cannot stand the idea of another family suffering the way this family has suffered. Please help support our efforts for change.

An open letter on why the existing laws on minor organ donation process need to be changed:

The dictionary defines Devastation as : Noun : great destruction or damage:

If your phone or computer is irreparably damaged, we may say it is devastating,  The time and money for repair or replacement is negligible, as well as the information contained can be retrieved or replaced

If your car is totaled in an accident,, we may say it is devastating, but again it is replaceable, with even more time, money and effort involved in its replacement

If your home is destroyed in an act of nature<fire, flood, hurricane> we all certainly agree this is devastating, however yet again it can be replaced with even more time, money and effort.

If you lose a loved one, be it spouse, immediate family or child,  that is the true definition of devastation.

No amount of money, time or effort will be able to replace this loss, the great damage or destruction is uncomprehensible, unreplaceable, and irrevocable.

To witness that child, the one you bought unto this earth passing is a pain no parent should endure, and in fact is often the greatest fear of parents. This fact we all know. When this devastation is compounded by the existing laws of organ donation it becomes exponentially greater.

I have personally witnessed the process with Catilyn Decillio’s passing, and I am here to tell you the laws must be changed for both the parents and the families of those impacted by this law’s total lack of compassion for those grieving the loss of a loved one.

From the days, yes DAYS, sitting in a waiting room, praying to the powers, promising anything from your life, to all that you possess that this tragedy will somehow be averted, to the never ending anxiety and helplessness as you wait for a miracle, of which you subconsciously fear is impossible but still hold out hope, to the endless doubts about all that was planned, all that was potential, and all that was dreamed for the love one,  The wait continues, hope wains, and emotional and physical exhaustion take their toll on the families as the minutes turn to hours , the hours turn to days, and the days can even turn to weeks.

After almost 2 weeks, 12 days, 288 hours, of witnessing my sister, Jessica Decillio and brother in law Tony Decillio, as well as nephew Tyler Decillio enduring a pain that no other humans should have to suffer. After watching my niece Caitlyn die not once, but twice, after countless hours and days, of tears, prayers, and loss of hope.

The loss of income to all three, the loss of faith in our laws, the loss of hope in the system is unprecedented, the nearly unfathomable desperation of hope, the strain on both fiscal resources and mental anguish is beyond those of us who do not firsthand experience them

Then the final insult is administered by a stranger, someone you have never even known, someone who doesn’t know your child, or even really care< or so it seems to the grieving family> that because your child<and age has a humongous factor here> checked a box on a form at age 16, mostly because you raised that child to be a good decent human and be giving to others, but partially and paramount to this law needing to be changed, is the fact the child doesn’t EVER think of what could happen, they are 16 and invincible, <we all were at that age, and most of us could not conceive of the ramifications of checking that box>.

The stranger informs you that since you have suffered the ultimate in devatational loss, they now have complete control over your loved ones remains. You as the grieving parent have NO CHOICE, no recourse, not even a say at all.  Because it’s the LAW.

The law says that this stranger now can dictate, among other things, if you can have an open funeral or if your family member MUST be cremated, because the stranger feels there are too many harvestable body parts that they cannot pass up. Including eyes, facial tissue, and any other body parts THEY deem usable.

The law says that this stranger can also inform you that not only have you suffered the ultimate pain, but you must endure it AGAIN, <in the case of brain death, the body must be declared dead, so that it can be revived and then DIE a second time to ensure that natural ressuitation is not possible> Something no parent who has not had to endure this calamity can even remotely conceive nor should they!

The LAW DOES NOT explain to an underage minor any of these things, The LAW does not allow for parental say after the doctors declare the child deceased. The LAW is wrong.  A minor is not allowed to sign a legally binding document in any other faucet of the law, except for the organ donation. A minor is not allowed to participate in any other contract that is binding over so many others , legally, except for the organ donation box on the license application.

Why is it that the LAW says a minor cannot vote, drink, or participate in a vast number of adult orientated situations? Because we as a society here in the United States of America understand that a level of maturity must be reached before we would trust this decision to any individual, EXCEPT for organ donation!!! Why is that?

Why is this one thing, the only LEGALLY BINDING contract that a minor can consent to,<to my knowledge> without parental or judicial oversight?

What makes the signing away of one’s body, after passing , something that a 16 yr old is fully capable or even mature enough to engage in? If they < a minor > are not permitted to control what they put into their body, why are they permitted to control what happens to that body post mortem?

 I cannot comprehend the levels of pain undergone by my family, I cannot imagine how the legal system of the United States allows it, and most importantly I cannot and do not want to believe that this is what was intended.  The LAW is wrong, the system must be changed, and only way that this needless suffering can end is by correcting it.

Honorable Members of Florida’s Senate, House, and the United States Senate, One of the most admirable things anyone can ever do is be an organ donor. Giving someone the potential for a second chance at life, allowing a family to spend more time with a loved one, temporarily avoiding the grief we go through when we lose someone close. Organ donation is truly the gift of life. I’m writing this letter to tell my story. I tragically lost my niece, Caitlyn DeCilio, to a choking accident at the young age of 23. As she lay lifeless in her hospital bed, we all prayed that God would grant us a miracle and she would recover. We ultimately came to understand he had other plans for his newest Angel. I found out my niece was an organ donor, just like myself and so many others, and it made me so happy and proud she was willing to share herself with a complete stranger, hoping to help them and their family through perhaps the toughest period of their lives. Caitlyn was a transplant from Connecticut and received her Florida driver’s license when she reached the age of 16. She proudly became an organ donor. When anyone signs up to be an organ donor, most understand what it means. We learned that different states have different rules and laws when it comes to donating and we just want to make sure those rules and laws are transparent to all donors and their grieving family members. The word “transparency” is often used in politics as a weapon. Through Caitlyn’s law we have the opportunity to use the word “transparent” as an opportunity to encourage more people to participate in the donation process. Transparency through education can be such a powerful tool that I believe would benefit a countless number of people. Conversation and consideration should also be given to parental/guardian approval for those not of age to sign what amounts to a legal contract. Organ donation is so important, and encouraging more people through education while simultaneously supporting a family during such an emotional time would only help show all involved how much their willingness to donate means to any recipient and the world. Thank you again for your time and listening to our family and Caitlyn’s extended family and friends. I would be happy to further discuss the subject if anyone feels I could have an impact.